Struggling with Proctitis!

Vik, you're a month in and some of these medications take many weeks to work (entyvio and methodextrate). Any improvement at all? The prednisone and Pentasa both should've helped by now...

Did you have a stool test to check for pathogenic causes to your symptoms?

Whenever our symptoms worsen it's always a good idea to get a stool test. As pathogenic causes like, notoriously c diff, can mirror UC symptoms but only respond to antibiotics (standard uc meds have zero impact). Something to consider at least...

So sorry you're dealing with this! I completely feel your pain! I'd suggest calling your doc again. Maybe trying something new? Not sure what? I know others have said on here before that if you're still having symptoms you shouldn't be stepping down the pred. I'm sure the stress of the exams is not helping either. So sorry you're dealing with this.

Hi VSingh,

Seems like Entyvio isn't working a 100% yet. From what I heard it does take a while to work, not like Remicade...
I second the idea that you should not taper pred if your symptoms are that heavy. That's how my GI works : when blood come back, he makes me stay to the dose where I am blood free and I try to taper again the week after. Sometimes, I just need an extra week at 30mg for example.

Also, your rectal pentasa doesn't seem to work as well as it should, especially because you have proctitis. Have you ever tried other enemas? The good one should helps with mucus and blood.

So i'm gonna throw some ideas here to help with the accidents and maybe you already know all that stuff!!! ;)

I would say it depends on the nature of your accidents/poop...
If it's mainly poop:
- Yes, have a c-diff test ASAP, don't wait for the appointment
- If you haven't tried yet, think about adding eventually a probiotic to your treatment. Probiotic is like lottery for us, the good one will help a ton and the bad one will make you feel bad for a few days or more... For me, Align is a trigger, but now I can't live without RenewLife ColonCare that helps me so much with diarrheas. (Little trick, try one before a GI appointment, so he could fix you if you choose the wrong one... It's scary I know, but when I did found the right one for me, my only regret was that I havn't tried them in 12 years of disease because I was too scare)
- Try slippery elm, helps to slow down diarrheas (approuved by my father and brother who have Crohn's)

If your accident are more mucus/blood (which in my experience is hard to hold):

Focus on healing your gut mucosa:
- Don't skip enemas
- Try L-Glutamine powder : morning (10g) and night (5g) on empty stomach
- Try to have more liquid meals (bone broth soups, pottage, protein shakes (buy a good one! something like Vega or SunWarrior) and smaller meals more often. Be patient, it may gives your gut the rest needed to heal the ulcers!

And one last thing, have you cut completly added sugar? Could help a lot!!!!

Good luck with your exams! Trust yourself, you'll do well

Hi VSingh,

Your question was : Also does the ulceration need to have been healed prior to the medication taking its effect?
My answer : I can only repeat what I've been told (not a doctor!), but my GI (who's kind of famous for IBD research in my country) thinks there's more chance for biologics to work and to put Crohn's/UC asleep for a long time if there's not much ulcers/inflammation at the beginning of the treatment.

I'm disapointed you cannot handle L-Glutamine, my hollistic doctor told me that some patients don't react well to it I havn't propose before, because L-Glutamine powder is so easy to take, but something else has worked for me for bood : Cabbage juice. You can read about it online, I take only 1oz (so it's just 1 big cabbage leaf) on empty stomach and I follow with veggies/fruit. Juicers are a really great accessorie to have when you have UC (good birthday gift to ask :P). It allows us to have fresh and raw veggies/fruit without any fibers. The only thing is that you have to clean it, but I used it since a year and my only regret is that I should have buy one before !

For turmeric, you've got nothing to loose by trying it! There's some great recipes with almond milk online : the Golden milk. Personally, I tried it, but for me, it's more the ginger than the turmeric that really helped me.

Oh and my hollistic gave me those others tricks for healing gut mucosa that have work for other patient : marshmallow root and butyrate supplement. Butyrate is also in ghee that you can use everywhere when you cook.

Give a real try on cutting refined sugar and anyway it's not healthy in general I found that riped banana substitute really well sugar in a few recipes.

We are all different, but for me, sugar is my biggest ulcers trigger. I never thought that for the 5 first years of UC. I had those mucous/blood accidents all the time, I was in pain and couldn't do anything physical. I cut sugar accidently (I was living in my first appartment and had no money for dessert! So I keeped the money for nutritive food only) and it put me in remission for 6 years. Since then, if I have sugar once it's okay-ish, but if it's a few days in a row, the blood come back...
And yes, I still have dessert from time to time (always feel the guilt!) but the days after, I manage to cut sugar completly and if the blood had came back, it goes away quickly.

I'm shure you'll go through it. You're so positive! Continue to listen to your body, he knows what's best and most important, be patient!

Resistant starch diet could be helpful for proctitis . Google and figure out your best food choices for this.

Fecal transplant is also a good option if you are interested in alternate treatment . Browse this forum or google or check into power of poop website.

Best wishes...

Hi everyone. First of all thanks to all for an overwhelming response! You guys are the best resource of knowledge when it comes to dealing with symptoms!

Just a quick update on the situation. So i managed to get through my exam period with minimal interruption from the proctitis. (I had to make sure i had left plenty of time each morning for the exams etc. Didnt eat or drink anything that i knew would worsen my symptoms the evenings before and also took Psyllium husk - I find this helps with the blood and mucous in the mornings!).

Since the exams, i have been tapering off the pred only to find my symptoms returning and becoming worse. They have reviewed my situation and are now starting me on Humira! I hope this works and is the medicine that finally puts me into remission!

I did find that the "Low fibre diet" given to me by the dietician has helped me no end to ease symptoms. Eating things like sweetcorn makes me 100x worse and i pay the price the next day!

I thank you all again for your responses. Does anybody have an reviews on Humira? Has it worked for their proctitis? I am hoping for the best and going in with a completely open mind to this treatment. Fingers crossed!